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The European health data space: Too big to succeed?

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cris.lastimport.scopus2024-02-12T20:29:29Z
dc.abstract.enIn May 2022, the European Commission issued the Proposal for a Regulation on the European Health Data Space (EHDS), with the aims of granting citizens increased access to and control of their (electronic) health data across the EU, and facilitating health data re-use for research, innovation, and policymaking. As the first in a series of European domain-specific “data spaces”, the EHDS is a high-stakes development that will transform health data governance in the EU region. As an international consortium of experts from health policy, law, ethics and the social sciences, we are concerned that the EHDS Proposal will detract from, rather than lead to the achievement of, its stated aims. We are in no doubt on the benefits of using health data for secondary purposes, and we appreciate attempts to facilitate such uses across borders in a carefully curated manner. Based on the current draft Regulation, however, the EHDS risks undermining rather than enhancing patient control over data; hindering rather than facilitating the work of health professionals and researchers; and eroding rather than increasing the public value generated through health data sharing. Therefore, significant adjustments are needed if the EHDS is to realize its promised benefits. Besides analyzing the implications for key groups and European societies at large who will be affected by the implementation of the EHDS, this contribution advances targeted policy recommendations to address the identified shortcomings of the EHDS Proposal
dc.affiliationUniwersytet Warszawski
dc.contributor.authorKrekora-Zając, Dorota
dc.contributor.authorSoutherington, Tom
dc.contributor.authorShabani, Mahsa
dc.contributor.authorSchlünder, Irene
dc.contributor.authorPrainsack, Barbara
dc.contributor.authorRoda, Sara
dc.contributor.authorMatei, Mihaela
dc.contributor.authorZając, Dorota Krekora
dc.contributor.authorKessel, Robin van
dc.contributor.authorHoeyer, Klaus
dc.contributor.authorEl-Sayed, Seliem
dc.contributor.authorDegelsegger-Márquez, Alexander
dc.contributor.authorColussi, Ilaria
dc.contributor.authorBoeckhout, Martin
dc.contributor.authorHoyweghen, Ine Van
dc.contributor.authorSharon, Tamar
dc.contributor.authorStevens, Marthe
dc.contributor.authorMarelli, Luca
dc.date.accessioned2024-01-26T10:12:23Z
dc.date.available2024-01-26T10:12:23Z
dc.date.issued2023
dc.description.accesstimeBEFORE_PUBLICATION
dc.description.financePublikacja bezkosztowa
dc.description.versionORIGINAL_AUTHOR
dc.description.volume135
dc.identifier.doi10.1016/J.HEALTHPOL.2023.104861
dc.identifier.issn0168-8510
dc.identifier.urihttps://repozytorium.uw.edu.pl//handle/item/122254
dc.identifier.weblinkhttps://api.elsevier.com/content/article/PII:S016885102300146X?httpAccept=text/xml
dc.languageeng
dc.pbn.affiliationlaw
dc.relation.ispartofHealth Policy
dc.relation.pages104861
dc.rightsOther
dc.sciencecloudnosend
dc.subject.enEuropean health data spaceEHDSData sharingData governancePublic value
dc.titleThe European health data space: Too big to succeed?
dc.typeReviewArticle
dspace.entity.typePublication